More than my appearance: a pilot evaluation of the expand your Horizon Online functionality-based writing programme for adults with visible differences.

Background: Adults with conditions that affect their appearance, known as visible differences, can experience appearance concerns, social anxiety, and depression. Interventions have been developed for this population to facilitate adjustment and coping skills; however, they have limited evidence of efficacy. The Expand Your Horizon [Alleva, J. M., Martijn, C., Van Breukelen, G. J., Jansen, A., & Karos, K. (2015). Expand Your Horizon: A programme that improves body image and reduces self-objectification by training women to focus on body functionality. Body Image, 15, 81-89. https://doi.org/10.1016/j.bodyim.2015.07.001] online functionality-based writing programme was adapted for adults with visible differences. Method: A pilot randomised controlled trial with a wait-list control group was carried out to assess preliminary intervention efficacy and gain information about the acceptability and feasibility of the programme. Forty-four adults aged 21-63 years (M = 40.21; SD = 12.05) with visible differences took part. Various facets of body image (i.e. functionality appreciation and body appreciation) as well as depression and anxiety were assessed immediately pre- and post-intervention and at three-months. Results: Participants reported enjoying the programme, felt that the format was acceptable, and it significantly increased functionality appreciation, which was maintained at three-months. However, there were no improvements in body appreciation, depression, and anxiety. Conclusions: In future, a full trial should be carried out with an active control group.

Parental concerns about genital differences in children with congenital adrenal hyperplasia persist regardless of the selected intervention.

BACKGROUND: Congenital Adrenal Hyperplasia (CAH) due to 21-hydroxylase deficiency (21HD) can affect the in utero development of the genital anatomy of people with the 46XX karyotype. Health professionals engage parents in decision-making regarding managing genitals with this difference, including genital surgery options and patient communication. AIM: We sought to investigate parental communication with their daughters regarding clitoral size variation related to neonatal CAH. METHODS: Semistructured in-person interviews of 24 parents of chromosomal XX children with clitoral size variation attributable to a neonatal CAH diagnosis comprised 3 management categories: (1) clitoral reduction surgery (RS) (7 parents, 9 children), (2) clitoral concealment surgery (CS) (8 parents, 8 children), and no surgery on or around the clitoris (NS) (9 parents, 7 children). OUTCOMES: Four representative themes, Obvious Choice, Still Different, Parental Burden, and Ignorance Is Bliss, were common across all 3 treatment groups. RESULTS: For most parents, none of the 3 options of genital appearance alteration via clitoral reduction, clitoral concealment surgery, or avoidance of clitoral surgery ameliorated concerns, with most parents expressing an aversion to educating their child on the topic of genital differences, past treatment, or future function. CLINICAL IMPLICATIONS: Reliance on surgical treatment pathways to manage this psychosocial concern is ineffective in alleviating parental uncertainty without the application of psychosocial interventions. STRENGTHS AND LIMITATIONS: This was a qualitative study but was limited to parents of children with a specific genital difference, without direct exploration of parental values regarding the clitoris or the application of adequate psychosocial care. CONCLUSION: Healthcare services must have an impact on parental ability to engage in essential communication with their children in cases such as clitoral size variation related to neonatal CAH. Improved communication skills allow parents to engage in more genuine decision-making and adapt to enduring genital reality, including possible future sexual challenges for their adult child, without resorting to burdensome strategies focused on attempts to perpetuate a benevolent ignorance.

Congenital melanocytic naevus (CMN) through the lens: Using photo-elicitation interviews to explore adjustment in adolescents with a rare birthmark condition.

Adolescents with the rare birthmarks congenital melanocytic naevi (CMN) experience physical and psychosocial challenges, many of which stem from looking different from the 'norm'. However, some adjust and have positive experiences. Understanding the lived experiences of adolescents who have adjusted to CMN can provide a holistic picture of adjustment and inform the development of support and interventions for others with the condition. Open, participant-driven photo-elicitation interviews were conducted with four White females (15-17 years) who self-identified as having adjusted to CMN. Participants chose five photographs which were used to guide the interviews (47-80 min). Interpretative phenomenological analysis (IPA) was used to analyse the transcribed interview data. Three superordinate themes were identified: 'Accepting My 'True' Self' (1), 'I am Not Alone in This' (2), and 'Developing as a Person' (3). The themes related to accepting CMN as part of their identity, developing a positive body image (e.g., body appreciation, broad conceptualisations of beauty, body image flexibility), feeling supported and accepted by family, friends, and others with CMN, and developing adaptive coping skills. Findings suggest positive body image may be important for adjustment and can be determined by an individual. The benefits of using photo-elicitation within appearance research are discussed.

'Scars: How Our Wounds Make Us Who We Are': Improving appearance-based stigma, conceptualisation of beauty and body esteem through a documentary.

Introduction: Those with an altered appearance as a result of injury, health condition or treatment can face stigma, which may contribute to adverse psychosocial outcomes. However, current research tends to focus on supporting individuals themselves to cope, rather than targeting societal stigma. This study aimed to reduce societal stigma towards this group, through the use of a documentary about people with scars. Methods: 146 adults completed questionnaires before and after viewing the documentary. Results: After viewing, participants had reduced self-reported intentions to behave in a stigmatising way towards those with visible differences, broader conceptualisation of beauty, and more positive body-esteem. Qualitative data also suggested further positive impacts. Conclusion: Those with visible differences (for example scars) are subject to societal stigmatisation which perpetuates psychological and social problems. Therefore, alleviating social stigma through the media, as demonstrated through the documentary in this study, may improve the lives of those living with visible differences. Lay Summary: People with an altered appearance or scars as a result of injury, health condition or treatment can face stigma, which may contribute to harmful psychological and social outcomes. However, current research tends to focus on supporting affected individuals themselves to cope, rather than targeting societal stigma. This study aimed to find out whether a documentary about people with scars was successful at reducing viewers' stigma towards this group. A group of 146 adults completed questionnaires before and after viewing the documentary. After viewing, questionnaires indicated that participants had reduced intentions to behave in a stigmatising way towards those with visible differences. Furthermore, they also viewed a broader range of appearances as beautiful and felt more positive about their own bodies. Comments and feedback from participants also suggested further positive impacts. Those with visible differences (for example scars) are subject to societal stigmatisation which can cause and worsen mental health problems. Therefore, alleviating social stigma through the media, as demonstrated through the documentary in this study, may improve the lives of those living with visible differences.

'I think it affects every aspect of my life, really': Cancer survivors' experience of living with chronic pain after curative cancer treatment in England, UK.

AIM: To explore cancer survivors' experiences of living with chronic pain after curative cancer treatment in England, UK. METHODS: A qualitative study using telephone interviews with adult cancer survivors experiencing chronic pain after curative cancer treatment. Interview data was analysed using a reflexive thematic approach [1-3]. FINDINGS: Nineteen participants: 14 female, 5 male, mean age 62.4 years, 1.5-48 years since cancer diagnosis, eight tumour groups represented. Six participants (31.6%) developed chronic pain more than ten years after completing cancer treatment (range 0-25 years). Five themes were generated which highlighted the experience of chronic pain after cancer treatment for cancer survivors: 1) 'Hear me… believe me…. Please'. Survivors felt that they had not been listened to when they tried to talk about their chronic pain after cancer treatment, nor at times, believed. 2) 'Expectation versus reality'. Survivors had anticipated returning to pre cancer quality of life yet living in chronic pain prevented them from doing so. 3) 'They don't understand…. We don't understand'. Cancer survivors did not feel informed or prepared for the risk or reality of chronic pain after cancer treatment and this compounded the difficulties of coping with and managing their pain. They felt health care professionals lacked knowledge and understanding of chronic pain after cancer. 4) 'Negotiating the maze'. Cancer survivors encountered unclear and limited pathways for support, often bouncing from one support team to another. Identifying and accessing services was a challenge, and the responsibility of this was often left to the survivor. 5) 'Validate my pain, validate me'. Palpable relief and benefit was felt when health care professionals diagnosed and acknowledged their chronic pain after cancer treatment. CONCLUSIONS: Cancer survivors can feel ill prepared for the risk of chronic pain after cancer treatment and can experience challenges accessing support from healthcare professionals and clinical services.

Disclosing the obvious: Psychosocial implications of (not) explaining facial differences.

Although the disclosure of invisible stigmatized identities has been frequently researched, little work has examined disclosure of facial differences (FD), in which stigma is often highly visible. People with FD are frequently expected by others to disclose or explain their condition. Qualitative work indicates that people with FD have a range of disclosure approaches from agentic disclosure (feeling obliged to disclose), autonomous nondisclosure (choosing not to disclose or to disclose only to certain people), and autonomous disclosure (choosing to openly disclose). The purpose of the present study was to validate these disclosure approaches in a large international sample, examine their frequency of use, and test their relationship to psychosocial outcomes using validated measures. English-speaking participants (n = 288) with 33 different types of FD completed an online survey of disclosure approaches and psychosocial outcomes (i.e. anxiety, depression, self-esteem, stigma, job satisfaction, and relationship self-concept). Participants disclosed to 59 % of the people they knew. Selective and indiscriminate disclosure were the most frequently used and recommended approaches. As predicted, autonomous disclosure was associated with more positive psychosocial outcomes than agentic (non)disclosure and autonomous nondisclosure. Findings from this study can support disclosure autonomy, and thus positive psychosocial outcomes, among people with FD.

Body image and psychosocial well-being among UK military personnel and veterans who sustained appearance-altering conflict injuries.

A modest but significant number of military personnel sustained injuries during deployments resulting in an altered-appearance (e.g., limb loss and/or scarring). Civilian research indicates that appearance-altering injuries can affect psychosocial wellbeing, yet little is known about the impact of such injuries among injured personnel. This study aimed to understand the psychosocial impact of appearance-altering injuries and possible support needs among UK military personnel and veterans. Semi-structured interviews with 23 military participants who sustained appearance-altering injuries during deployments or training since 1969 were conducted. The interviews were analyzed using reflexive thematic analysis, identifying six master themes. These themes indicate that in the context of broader recovery experiences, military personnel and veterans experience a variety of psychosocial difficulties related to their changed appearance. While some of these are consistent with evidence from civilians, military-related nuances in the challenges, protective experiences, coping approaches, and preferences for support are evident. Personnel and veterans with appearance-altering injuries may require specific support for adjusting to their changed appearance and related difficulties. However, barriers to acknowledging appearance concerns were identified. Implications for support provision and future research are discussed.

Do congenital and acquired causes of visible difference predict distinct appearance-related psychosocial outcomes?

Having a visible difference caused by an appearance-altering condition or injury can impact psychosocial wellbeing. It remains unestablished whether the time at which a visible difference manifests, namely pre-memory (congenital) or later (acquired), predicts psychosocial outcomes associated with adjustment. In this survey study of 331 adults with visible differences, we tested whether their type, congenital (n = 161) or acquired (n = 170), would predict four key psychosocial outcomes: Appearance satisfaction, social appearance anxiety, life disengagement and intimacy distress. To account for other potential predictors and to test whether other variables would moderate any predictive effect found from the type of visible difference, the analyses also included demographic variables, visible difference characteristics and history, and interpersonal and intrapersonal factors. Four regression models were tested. With all variables entered, we found no evidence of type of visible difference as a significant predictor of any psychosocial outcome. Instead, the only consistent predictors of outcomes were optimism, social support and the extent to which participants felt able to disguise their difference. Overall, findings do not support the idea that there is a psychosocial advantage to having a congenital nor acquired visible difference, and broadly reinforce commonalities in adjusting to any cause.

Experiences and impact of the UK lockdown amongst adults who have a facial visible difference.

Globally, COVID-19 has been shown to have had a wide ranging and significant impact on individuals' daily living, and physical and mental health. However, there are some groups of individuals who may encounter unique challenges with regards to COVID-19 and whose experiences have not been investigated thus far. Therefore, this study aimed to understand the experiences of adults with a facial visible difference in relation to COVID-19 and lockdown. Semi-structured interviews were conducted with 21 adults with a variety of facial visible differences (e.g., cleft lip/palate, facial scars, skin conditions) and analyzed using inductive reflexive thematic analysis. This analysis generated three themes (Escaping the external gaze; Existing feelings manifesting in new challenges; COVID-19 taking priority). The results of this study suggest that the first U.K. lockdown from the COVID-19 pandemic created significant challenges for some individuals with a facial visible difference, and ongoing restrictions and social distancing measures might be particularly challenging for those who experience anxiety around social encounters. These findings highlight the importance of providing appropriate and accessible support for people with facial differences during lockdown and as restrictions ease.

Body image concerns in long-term head and neck cancer survivors: prevalence and role of clinical factors and patient-reported late effects.

PURPOSE: Head and neck cancer (HNC) patients are at risk of long-term body image distress (BID). We aimed to investigate the severity of BID in long-term HNC survivors and to explore the associations between sociodemographic and clinical factors, patient-reported late effects, and cancer-related body image (BI) concerns. METHODS: This cross-sectional study included quality of life and BI assessment in an 8-year (SD = 1.58) follow-up after treatment among 258 HNC survivors. Multinomial logistic regression analysis was used to investigate the relationship between three groups of BI concerns (no concerns, mild to moderate concerns, and BID) and patient-reported late effects. Sociodemographic and clinical variables were included in the model as covariates. RESULTS: A total of 51.2% of participants had mild to moderate BI concerns, and 9.5% reported BID. Compared to those with no BI concerns, participants with BID were more likely to live without a partner, to have had radiotherapy and surgery, and to report worse emotional functioning and higher oral and throat pain. Compared to participants with no BI concerns, those with mild to moderate concerns reported higher oral and throat pain and speech problems. CONCLUSIONS: Some level of cancer-related BI concerns persisted in the majority of HNC survivors many years after treatment, while a small proportion of survivors experienced BID. BI concerns were associated with treatment modality and patients' daily functioning and symptoms. IMPLICATIONS FOR CANCER SURVIVORS: Insight into factors associated with BI problems may help to identify survivors at risk and may facilitate closer follow-up of survivors in need.

Physical appearance and well-being in adults with incurable cancer: a thematic analysis.

OBJECTIVES: Existing research has established the importance of appearance concerns for individuals with cancer and identified appearance as an important factor in dying with dignity. No research, however, has explored in depth the role of appearance in the experiences of individuals who have incurable cancer. This research aims to explore patients' experiences and perspectives in relation to the role of appearance issues in adults with incurable cancer. METHODS: Semi-structured interviews were conducted with 24 adults with incurable cancer (20 women, 4 men; mean age 54.5, SD 11.32). RESULTS: Thematic analysis generated three themes: 'Identity: Embodying Cancer', 'Communication: Wearing your illness' and 'Support: Holistic Care'. Appearance was felt to be an important element of identity, which was often dominated by cancer, leading to feelings of separation from the participant's previous self. Appearance changes also influenced the way in which individuals communicated with their external world, forcing discussion of their diagnosis, and increasing focus on their cancer, with participants having to manage the emotional impact of this on loved ones, as well as the impact on their legacy. Finally, participants highlighted the positive impact of appearance-related support in their well-being and identified peer connections and refocusing on the self as key elements of such support. CONCLUSIONS: Appearance changes play an important role in the experiences of individuals with incurable cancer with regards to both identity and communication and challenged participants' ability to maintain normalcy. Further psychosocial support relating to appearance concerns was considered necessary to promote dignity and provide truly holistic patient care.

Exploring parents' attitudes towards a multicentre cohort study of children with burns injuries: A qualitative interview study.

Background: Burn injuries affect more than 60,000 children every year in the UK, with many experiencing scarring as a result. Scarring can be highly variable, and research is required to explore the factors that may influence variability, as well as the psychosocial impact of these injuries on children and their caregivers. A multicentre burns cohort study is being planned to investigate genetic determinants of scarring and long-term psychosocial outcomes. Public involvement (PI) is an essential element of the design and feasibility stages of this planning. As part of this work, this study aimed to gain an in-depth understanding of parents' attitudes towards participation in burns research, specifically a longitudinal cohort study of children with small burns (<10% total body surface area [TBSA]). Methods: In total, 16 parents of children with burns took part in semi-structured interviews regarding their experiences of taking part in research and their attitudes towards the potential future cohort study. Interviews were audio-recorded, transcribed verbatim and analysed using Reflexive Thematic Analysis. Results: Four themes were identified: 'Acknowledging trauma'; 'Aligning research with experience'; 'Research as a reciprocal relationship'; and 'Contributing to change'. Discussion: These four themes represent factors that parents suggested were important for acceptability, relevance, recruitment and retention of participants into a longitudinal multicentre cohort study of children with a burn injury and their caregivers. Conclusion: The findings of this study will be incorporated into the design of such a study, as well as having wide reaching relevance for research in the field of paediatric burn injuries. Lay Summary: Background to this subject More than 60,000 children experience a burn injury every year in the UK and many of these injuries lead to scarring. We know that the extent of this scarring can vary, and we know that some children and their parents/caregivers manage well but others struggle with the challenges they face after having a burn. Researchers would like to carry out research on these topics, including asking participants to take part in research over several years to find out how genetics might influence scarring, as well as their psychological experiences over this time. Before they conduct this study, it is very important that researchers understand parents' attitudes towards this kind of research. The current study aimed to find out parents' opinions and ask what issues were important to them when taking part in burns research. Details of how the work was conducted Parents of children who had experienced a scald (a type of burn injury) were asked to take part in a research interview. In total, 16 parents took part in this study. We recorded these interviews and analysed them, looking for patterns and shared experiences in participants' interviews. What we did and did not learn from this study We found four themes in the interview data: 'Acknowledging trauma', 'Aligning research with experience', 'Research as a reciprocal relationship', and 'Contributing to change'. Overall, these themes suggest that parents were mostly supportive of a 'burns cohort study', but they have also highlighted some important considerations for this research and other future burns research studies.

The impact of hegemonic masculine ideals on self-esteem in prostate cancer patients undergoing androgen deprivation therapy (ADT) compared to ADT-naïve patients.

PURPOSE: Androgen deprivation therapy (ADT) for Prostate Cancer (PCa) is associated with side effects that could lead to negative body image and low masculine self-esteem of survivors. We compared a group of PCa survivors following ADT with ADT-naïve patients, expecting the ADT group to show lower masculine self-esteem. We also expected patients with hegemonic masculinity ideals to show poorer masculine self-esteem and we hypothesized that ADT would moderate this relationship, expecting PCa patients on ADT with stronger hegemonic ideals to show the worst masculine self-esteem scores among study participants. METHODS: We compared 57 PCa survivors on ADT (Mage  = 64.16 (7.11)) to 59 ADT-naïve patients (Mage  = 65.25 (5.50)), on the Masculine Self-Esteem Scale (MSES), Body Image Scale (BIS), and Hegemonic Masculinity Ideals Scale (HMIS). RESULTS: While the two groups did not significantly differ on masculine self-esteem (F [1, 115] = 3.46, p = 0.065, ηp 2  = 0.029) and body image (F [1, 115] = 3.46, p = 0.065, ηp 2  = 0.029), younger age was significantly associated with higher body image issues (F [1, 115] = 8.63, p < 0.01, ηp 2  = 0.071, ß = -0.30). Hegemonic masculinity significantly predicted more masculine self-esteem related issues (t (2, 114) = 2.31, ß = 0.375, p < 0.05). ADT did not moderate this relationship. CONCLUSIONS: The results suggest that endorsing hegemonic masculinity could represent a risk factor for low masculine self-esteem regardless of ADT status and that younger age is associated with negative body image among PCa survivors. IMPLICATIONS: These results suggest the importance of inclusion of topics related to hegemonic masculinity when providing support to PCa survivors, both when discussing treatment side effects, as well as in the later phases of survivorship. This pilot also suggests that younger PCa survivors might benefit from body-image focused support regardless of treatment plan.

A systematic review of interventions aiming to promote positive body image in children and adolescents.

Evidence shows interventions can improve positive body image in adult women. This systematic review examined the evidence of efficacy of interventions that aimed to increase positive body image in children and young people aged under 18 years. The authors followed PRISMA guidelines for the review. Searches of CINAHL Plus, Medline, PsychINFO, Wiley Online Library, SCOPUS and grey literature were conducted up to February 2021 and identified 4171 papers. Thirteen studies evaluating 12 interventions, designed for children/adolescents aged 9-18 years, were eligible and evaluated using the Effective Public Health Practice Project (EPHPP) Quality Assessment Tool. The studies evaluated body appreciation, body-esteem, and embodiment. Studies using cognitive dissonance, peer support, and psychoeducation had evidence of improving body appreciation and body-esteem in adolescent girls. However, evidence of efficacy for younger children and boys was lacking and the studies ranged in methodological quality. Further research should rigorously evaluate positive body image interventions using second-generation measures that assess specific components of positive body image and consider how to promote positive body image in young children and boys.

Exploring the experiences and psychosocial support needs of informal carers of men with breast cancer: a qualitative study.

PURPOSE: The provision of practical and emotional support for men who have been diagnosed with breast cancer in the UK falls primarily on their partners, close family members or friends. However, informal carers' experiences are omitted from the research literature. Therefore, the present study aimed to explore the care-giving experiences of informal carers (ICs) of men with breast cancer in the UK and identify psychosocial support needs and preferences. METHODS: Semi-structured interviews, conducted on the telephone or via online video calls, explored ICs' experiences of providing support, the psychosocial issues they faced and the impact of the illness on themselves and their relationship with the patient. They were also asked about any support previously offered to them, in addition to their support preferences. Twelve ICs participated (11 females, 1 male), and 9 were spouses. Interview transcripts were analysed with reflexive thematic analysis using NVIVO software. RESULTS: Four key themes were identified: "The impact of caring", "Lack of awareness", "Isolated and alone" and "Making a difference". CONCLUSIONS: The physical, emotional, financial and social impact of providing emotional and practical care and support for a man diagnosed with breast cancer can be considerable. ICs may experience significant levels of distress and often feel isolated. Greater awareness and more research is needed to better understand the psychosocial impact and support needs for ICs of men with breast cancer. There is an evident necessity to address their information needs and offer sources of support throughout the cancer journey.

Rheumatology patients' perceptions of patient activation and the Patient Activation Measure: A qualitative interview study.

INTRODUCTION: An important aspect of self-management is patient activation (the skills, abilities and confidence someone uses to actively manage their health). The dominant method of capturing patient activation is the Patient Activation Measure (PAM) which has been integrated into many aspects of clinical practice in musculoskeletal care. However, limited research has investigated how rheumatology patients understand and perform patient activation, and how closely their perceptions align with the PAM. METHODS: Seventeen patients from two rheumatology departments in South West England participated in semi-structured interviews at two timepoints. They discussed how they actively managed their health and their views on the PAM. Data on activation were analysed using framework analysis and data on the PAM were analysed using content analysis. RESULTS: Participants self-managed with determination, finding ways to make small, sustainable behaviour changes and effectively navigate the healthcare system. They reported the value of knowing what self-management techniques suited them individually and reported benefitting from positive perceptions of their own health and good social support. Participants noted that the PAM did not always capture the fluctuating nature of their inflammatory arthritis and the collaborative nature of healthcare. CONCLUSIONS: Patients' perceptions and experiences of patient activation covered a wide range of skills, behaviours and beliefs. However, these are not always captured by the PAM. Therefore, its use as a clinical tool is best accompanied by dialogue with patients to understand their self-management.

'My face in someone else's hands': a qualitative study of medical tattooing in women with hair loss.

The psychological and social impact of hair loss and its ongoing treatment can be considerable. Medical treatments are not always successful, and alternative treatments, such as medical tattooing, are growing in popularity. The aims of this study were to explore adults' motivations, experiences, and self-perceived outcomes in relation to medical tattooing. Individual telephone interviews were conducted with 22 women from the United Kingdom aged 26-67 years who had undergone medical tattooing in the past 5 years related to hair loss. Interviews were transcribed and inductive thematic analysis was performed. Appearance concerns, loss of self-confidence/identity, and the practicalities of daily upkeep were cited as reasons for seeking a semi-permanent solution. Trust in the practitioner and the ongoing costs of tattoo maintenance were important considerations in participants' decision-making process and their overall satisfaction with treatment outcomes. Participants felt the emotional impact of hair loss and the subsequent need for appearance-restoring treatment remains unrecognised. This study provides insight into participants' perceptions of an under-researched and unregulated but widely accessible treatment. Implications for the decision-making process are discussed, and suggestions for health professionals are offered.

Factors associated with patient activation in inflammatory arthritis: a multisite cross-sectional study.

OBJECTIVES: Patient activation covers the skills, abilities and behaviour that impact how able and willing someone is to take an active role in self-managing their health. This study explored clinical and psychosocial factors associated with patient activation in rheumatology patients. METHODS: This was a cross-sectional study using postal survey methods. Participants with inflammatory rheumatic conditions were from six rheumatology centres in England. Patient activation was captured using the Patient Activation Measure (PAM). Twenty-nine explanatory factors were tested for potential association with patient activation in univariable and multivariable analyses. In preliminary multivariable analyses, factors found to have an association with patient activation at a P < 0.1 level were entered into the final multivariable model. Those that remained significant at a P < 0.05 level were considered associated with patient activation. RESULTS: The sample comprised 251 participants (74% female) with a mean age of 59.31 years (s.d. 12.69), disease duration of 14.48 years (s.d. 12.52) and a PAM score of 58.3 (s.d. 11.46). Of the 29 candidate factors, 25 were entered into a preliminary multivariable analysis. In the final multivariable analysis, four factors (self-efficacy, the illness belief that treatment will control participants' condition and two dimensions of health literacy) were significantly associated with patient activation. This final model accounted for 40.4% of the variance in PAM scores [F(4, 246) = 41.66, P < 0.001]. CONCLUSIONS: Patient activation is important in managing rheumatic conditions. Our data confirm that self-efficacy and health literacy are particular targets for patient activation interventions.

'They were aware of who I was as a person': Patients' and health professionals' experiences of using the PEGASUS intervention to facilitate decision-making around breast reconstruction.

OBJECTIVE: Many women choose to have breast reconstruction after mastectomy; however, decision-making can be difficult and expectations are often unmet. The PEGASUS intervention (Patient Expectations and Goals: Assisting Shared Understanding of Surgery) was developed to support shared decision-making by helping women and healthcare professionals to clarify and discuss their individual expectations around surgery. This study aimed to explore patients' and health professionals' experiences of using the intervention and its implementation. METHODS: Forty interviews were conducted with participants in a large scale, multi-site trial of the effectiveness of PEGASUS, from 'intervention' (n=16) and 'usual care' groups (n=11), and healthcare professionals (n=13). Data were analysed using thematic analysis. RESULTS: 'Usual care' participants described feeling overwhelmed in decision-making ('bombarded'), often using their own research to break down information ('process of elimination'). In contrast, intervention group participants described PEGASUS providing focus ('focus amongst the frenetic'), and increased connection with clinicians ('more than a number'). Healthcare professionals described increased focus on patient priorities ('shifting focus'), but stressed the need for whole team buy-in ('collective commitment'). CONCLUSIONS: The PEGASUS intervention offered a qualitatively different experience to individuals considering breast reconstruction, with potential to enhance patients' and healthcare professionals' feelings of shared decision-making and patient-centred care. TRIAL REGISTRATION: ISRCTN 18000391 (https://doi.org/10.1186/ISRCTN18000391) 27/01/2016.

"Have We Done Enough?" A Cross-condition Exploration of the Experiences of Parents Caring for A Child with an Appearance-affecting Condition or Injury.

Children and young people (CYP) with appearance-affecting conditions/injuries report common pervasive psychosocial difficulties, regardless of cause, nature or extent of their visible differences. Parents or carers can also experience psychosocial difficulties and challenges specific to having CYP with a visible difference. Current literature is confined to exploring condition-specific concerns of parents, typically in more prevalent appearance-affecting conditions/injuries, whilst the experiences of parents of CYP with other visible differences are unknown. Thirty-one interviews (parents n = 20, health and support professionals n = 11) and 4 parent focus groups (n = 25) were conducted. Three overarching themes were constructed: "Appearance does(n't) matter" describes the impact of having a child with a socially undesirable appearance; "Being 'battle' ready" reflects parents' desire to arm their child with resources to manage challenges, whilst "Walking the tightrope" reflects parents' lack of clarity about how best to approach this. Findings highlight shared and common cross-condition psychosocial difficulties among parents and carers.